Hacker News, thank you for all the links and all the great reading. Now I have to say goodbye.
I’m with my wife Bess (https://bessstillman.substack.com/) and my brother Sam, and crying, but it is okay. At the end of Lord of the Rings Gandalf says to the hobbits, "Go in peace! I will not say: do not weep; for not all tears are an evil.” And that is how I feel now. Ending prematurely hurts, but all things must end, and my time to end is upon me.
Here's a couple mind-bending NDE experience reports from doctors:
https://www.youtube.com/watch?v=JL1oDuvQR08
https://youtu.be/gpfriTZDWCY?t=2777
See you on the other side
These are very interesting.
I used to be convinced that NDEs were either made up, or the brain rebooting or something like that. I'm not so sure about it anymore. I'm not religious (not anti-religious either), but there are a lot of options between nothingness and a religious expectation of an afterlife. Maybe these NDEs are indicators of something else. I was surprised to see that almost 20% of people that "die" report them. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6172100/
Thanks for posting these.
Thank you for sharing these.
I highly recommend this film "Griefwalker" to anyone anytime death comes up. I find Stephen's views fascinating and for an end that meets us all we sure like to avoid talking about death.
For me it's The Fountain.
Lost my wife about 1.5 years ago. It was expected and unexpected at the same time. Long metastatic cancer treatment that ended all of the sudden, in a few weeks of unconsciousness ("coma") with an auto immune brain disease, likely caused by chemo.
As the partner left behind, I nothing but empathy to Bess. As an avid, ultra pragmatic, HN reader though, I've gathered resources so I'll list them here:
Forums / chats:
https://www.reddit.com/r/widowers/ - This one I used immediately after. Yelling into the void. Crying. Having other people cry with me. Make sure I'm heard.
https://discord.gg/CFQfCdby - /r/widowers discord. This one is "good" for the first few days / weeks / months, when the pain is great and the sense of lost is overcoming and you just need someone to talk with, someone who's been through this, right now. Everyone is friendly, rules to keep things sane and not triggering are in effect.
Facebook groups - I know, ugh. But it helps to see other people in the same boat. Somehow. A little. For me it was "Young and Widowed With Children" (well, me) and some of the black humor groups e.g. "Widow(er) Humor". Find your tribe. It really does help.
Books:
It's ok you're not ok - https://www.amazon.com/Its-That-Youre-Not-Understand/dp/1622... - This is "the book". Everyone recommends it and it's justified. If you can't bring yourself to read, get the audible version. I did, it was easier to lie in bed with eyes closed.
Irreverent Grief Guide - https://www.amazon.com/gp/product/B08L5RRJ9D - this one is a "how to" guide. I mean a real "how to", emotionally. I, and possibly many on /r/widowers/ found it priceless.
Videos:
https://www.youtube.com/watch?v=dzOvi0Aa2EA - Huberman labs - a really short video on how your brain needs to reorient itself after loss.
Kids:
"The widow's survival guide" - https://www.amazon.com/Widows-Survival-Guide-Living-Children... - "you're not alone in the mess" kind of book. Again, audible version available.
Kids' books (mine was 3.5 so YMMV):
Reread over and over:
- The invisible string - https://www.amazon.com/gp/product/031648623X
- Fix-it man - https://www.amazon.com/gp/product/1925335348
- Missing mummy - https://www.amazon.com/gp/product/0230749518
- The sad dragon - https://www.amazon.com/gp/product/1948040999
- Something very sad happened - https://www.amazon.com/gp/product/1433822660
- Love is forever - https://www.amazon.com/gp/product/0615884059
- I'll See You In The Moon - https://www.amazon.com/gp/product/1989123309
- My heart will stay - https://www.amazon.com/gp/product/0578794578
- The heart and the bottle - https://www.amazon.com/gp/product/0399254528
- Always remember - https://www.amazon.com/gp/product/0399168095
- The garden of lost balls - https://www.amazon.com/gp/product/B0BLQW27XX
- Gone but never forgotten - https://www.amazon.com/gp/product/B09SNY9VF3
Actually, therapy and meds before, if not already. Anticipatory grief is a thing and processing it can make later days a bit easier. Anti anxiety meds (NDRI) can create "inoculation" effect to some extent. SSRIs probably as well. Understand depression, the symptoms, the issues. Educate family and friends. Establish rapport with a therapist.
Friends and community:
Expect loss of friends. It's terrible but it happens a lot. Extremely common that friends will silently disappear after a few days or weeks. Not even just joint friends. People are awkward around grief. Community, however, does seem to work well. Rely on them. Don't say no to food offers, it helps. Doordash! Don't be shy about it, it's fine to eat junk food. Don't drink though and don't get high, it deepens and prolongs the grief symptoms.
Calls:
Don't forget your family or close friends. I've had daily calls with my sister. It helped a ton. Scheduled daily calls.
Forgot to add: Journaling helped me a lot. I favored writing this as "letters" / "texts" to my wife. As if she's here, just telling her about my day, feelings, emotions, what our kid did, what happened around us, family and friends. Venting, crying, blaming, being frustrated, being happy, being proud. All goes in there.
“I wish it need not have happened in my time," said Frodo. "So do I," said Gandalf, "and so do all who live to see such times. But that is not for them to decide. All we have to decide is what to do with the time that is given us.”
Godspeed, enjoy your family.
You put words onto page with which given a thousand I could not have equaled. We will all follow, in time.
"I see life as a roadside inn where I have to stay until the coach from the abyss pulls up. I don't know where it will take me, because I don't know anything. I could see this inn as a prison, for I'm compelled to wait in it; I could see it as a social center, for it's here that I meet others. But I'm neither impatient nor common. I leave who will to stay shut up in their rooms, sprawled out on beds where they sleeplessly wait, and I leave who will to chat in the parlors, from where their songs and voices conveniently drift out here to me. I'm sitting at the door, feasting my eyes and ears on the colors and sounds of the landscape, and I softly sing - for myself alone - wispy songs I compose while waiting.
Night will fall on us all and the coach will pull up. I enjoy the breeze I'm given and the soul I'm given to enjoy it with, and I no longer question or seek. If what I write in the book of travellers can, when read by others at some future date, also entertain them on their journey, then fine. If they don't read it, or are not entertained, that's fine too."
Thank you for everything.
My mom just passed from ALS and now this. It's so unfair that we have essentially no working treatments for these, even though they always tout how advanced medicine is but I feel like it really is not advanced at all
Thanks for everything Jake. I only have a vague understanding of what you are going through after seeing my grandma go through some of the same things, yet I still can’t imagine how hard it is for you and your family.
Wishing you and Bess all the best and if you or her need anything feel free to reach out. Godspeed
I learned a lot from you Jake. I hope you two see each other on the other side.
Reminds me of Novaspirit Tech's announcement that he's got cancer :( [1]
So sorry to hear these incredible people's sufferings
Bless ya, Jake. Go be comfortable now, and may you and Bess both have peace.
I do not know you, but I'd like to send you and your family my best wishes and empathy.
Good wishes to you and your friends and family.
God bless you and your family. You are a brave man who has helped many.
Rest easy. My thoughts are with you and your family.
Your words have made a wide impact on this corner of the internet, and I’m lucky to have experienced them.
3 and 1/2 years ago I lost my mate prematurely. A long protracted illness with much pain and suffering. I'm sorry for you and your wife are going through and have gone through. It is very hard.
There were a lot of things that helped me through. If your wife would ever like to talk to someone who's been through it, even though I'm a guy, she is always welcome to reach out to me.
Username at gmail.
Thank you Jake. I hope at the end they can just .. ignore any best practices of responsible narcotics dosing.
Your courage in not withdrawing in your sickness, of being open with all of us about your journey and what you've learned, is heroic. It's an amazing example of how to be a mensch to leave behind for your daughter.
All love and solidarity your way. Thank you for your courage and kindness.
If our civilization survives, we will, one day, through one manner or another, banish death. If that day comes, when it comes, I hope Jake's name is remembered for the monument to all who we lost, all of us who've had to grow and live and find meaning under the specter.
Just wanted to say thank you and farewell. You are in good hands with hospice.
Thank you to you and Bess for your writing and sharing your story with the world. I have found it to be personally very helpful.
Hi Jake, I lost my father to cancer this year, he was 59. I hope you know your memory lives with the people that are with you, now and in the future. I understand what your family is going through even though I can't understand your pain, thanks for putting your writings out there, take care.
Be well. I'm so glad you are with people that care.
I have always like the quote "Death the price of entry you pay on the exit". We all have to pay it at some point. All that matters is that you had a grand time.
Take it easy. Have a laugh where you can. Embrace the love. And take that final curtain call like a champ!
Thanks so much for sharing your struggles and wisdom.
I feel the world is a better place, for this kind of thing.
Hey this might be kind of a weird thing to say but screw it. I’ve been suicidal recently and seriously considered ending my life. One reason I have decided to hold on and get help is inspiring stories like your own. I look at how much dignity, energy, and love you have espoused even while having a terminal illness and I feel ashamed. Some people out there have been given so little and done amazing things with it, and I’ve been given so much and done nothing. In this strange way I feel like I owe you something even though you’re a stranger on the Internet. I want to be someone like you who is strong. Just wanted to let you know that.
With love, please consider - the "shame" you're describing is really something else in a mask.
Perhaps... a longing? Maybe this stranger has helped you find the place where you do truly long for life.
Let the feeling be. Don't label it shame. Don't label it longing. Just let it be. Give it space. Cry if you feel like it. Laugh if you feel like it. Just feel it.
And when you're ready to speak about this with others, there will be many, many willing to be there for you. You are loved.
Another perspective: shame can be good. Feel it. Shame for who you are can light a fire in you, can propel you into transformation. Shame for one's past self is normal, if one has undergone any growth, and in time one may forgive himself. But not now, not when you know yourself and you see all the ways you are lacking. Not when you are so wholly disappointed in your life that you want to end it. _Longing_ for a different life will not result in change. Shame, and deeply ruminating on it can. In time you will transform and can forgive the past self you are ashamed of, but not now in your time of desperate need.
I think it’s worth drawing a distinction between guilt, which can be positive, and shame, almost never. Guilt is feeling badly because you know you’ve done wrong. Shame is feeling badly because other people know you’ve done wrong.
I still feel shame can be noble. To try to live up to the example of others and feel ashamed that you are not anywhere near their greatness. Not guilty, because you have not done wrong, but shame, because you are not enough compared to another.
I've been reading Five Chimneys by Olga Lengyel, a Holocaust survivor who went through the most terrible of ordeals. She became suicidal and a Frenchman who got her involved in the camp resistance told her that if there were just one reason not to do it, it was so she could do little things to make the lives of people around her better. She took this to heart and it pushed her through to eventual liberation and living till her 90s. I appreciate words are cheap, but I found this inspiring and a good way to think about life when all else seems lost.
Please don't be ashamed for your thoughts, nor feelings. Each of us have struggles of our own and we cannot compare our paths or strength with others. Just because some people cope differently, doesn't mean there is anything wrong with you or the way you process pain. Each of us is unique, with our own backstory.
I have recently also struggled with the decision whether to end my life. I was afraid to seek help and to talk to a professional.
If you ever feel like you need someone to listen or just talk to, please reach out at Twitter or at <username>@gmail.com
Gandalf also said, "End? No, the journey doesn't end here. Death is just another path, one that we all must take. The grey rain-curtain of this world rolls back, and all turns to silver glass, and then you see it."
He did? I'm surprised to find a quote I'm not familiar with. On what page of which edition did he say this?
Great quote.
Also, props for a cool personal blog and project list, I'm listening to Phasmaphobe now... congrats on creating and publishing a full-length album! No easy feat.
Thank you. You don't know me but your story and life has had a profound impact on my perspective on what’s important. Thank you.
Amen.
Jake, I am so, so sorry for everything you’ve gone through and wish peace for you and the best for your loved ones. I’ve followed your story here and always been touched by your candor. Thank you for all your contributions. I was rooting for a better outcome and am sorry that it hasn’t arrived. Goodbye.
Thank you for pieces such as the following one on the unreasonable promise of mRNA vaccines and the right to try new treatments:
https://jakeseliger.com/2023/07/22/i-am-dying-of-squamous-ce... .
HN discussion:
https://news.ycombinator.com/item?id=36827438
It has been heartbreaking to follow, but all the same an important documentation. You are a true hero. I am at a loss to know what else to say.
See ya on the other side. Or not.
Take care Jake. It was a privilege to follow along, and I wish you peace on your journey.
Jake, no matter what happens in the days ahead, I wish you peace and equanimity. Thank you for sharing your journey with the world.
This really sucks. I don't know you, but I don't want this for you, but there's nothing I can do.
I've been reading your writings for a few months and I can assure you that you're on a lot of strangers' minds, passively making positive change in other people. I wish all the best to you and your family.
Godspeed, Jake. Thank you.
Go in peace. Through your writing you've made a positive impact on me, and I'm sure others in your time here. That's all any of us ever hope to do. Go in peace.
Wishing you the best Jake. Thanks for sharing your story with us. I sort of believe the little bit of what Douglas Hofstadter said in I am a strange loop, essentially, small bits of your soul live on in the rest of us who read your story and interacted with you here.
You inspired me to make changes I needed to make.
Infinite love to you and your family.
Thank you for sharing so much of yourself with us these past months.
Rest easy, and thank you for sharing your experience with us. I’ve read your words for such a long time now, and I’m happier for it; thank you again
Thank you for everything Jake, See you on the other side
Always appreciated seeing your "byline" on things around here and elsewhere. I'll miss you.
Good luck, to the extent that's even possible anymore.
Thanks for everything you've written, it will be a useful legacy to many.
Take care of you and yours as you can. My thoughts are with you and Bess who has been a true champion through your ordeal.
Thanks for sharing your journey with the world. I haven't read them all, but I have read several and while terrifying I know they will help others navigating similar journeys.
Rest well and all the love for those close to you.
See you in another life, brother. So long, and thanks for all the fish.
Thank you for your posts. They meant a lot to me and I will use them to try and help others. They have helped me.
Thank you Jake, it's been real to follow these developments.
You've touched a lot of us, and if leaving impressionable impacts on others is the highest quantifiable order in this life -- I think this was a job very well done :) and you've inspired many to continue that cycle. Rest well, see you on the other side.
Your fighting spirit and clarity of mind have been an inspiration. Very few patients struggle on their own behalves as you and Bess have done -- and in such a flawed and labyrinthine medical-regulatory environment. Thank you for writing about it... I only wish they had made things easier for you. And I hope that the coming days bring peace and comfort.
Thanks for sharing. Your dignity and courage is inspiring.